Advance Care Planning and Dementia: Why Earlier Conversations Matter

A diagnosis of dementia can bring an overwhelming number of questions.

What happens next? How quickly will things change? What kind of care will be needed? Who will make decisions if my loved one eventually cannot?

With so much to process, conversations about future healthcare decisions may feel like something that can wait.

But when dementia is involved, earlier conversations can be one of the greatest gifts a family gives itself.

Advance care planning allows a person to express what matters to them, identify the people they trust, and participate in decisions about their future while they are able to do so.

It isn't about taking control away.

It's about protecting their voice.

Why Advance Care Planning Matters With Dementia

Dementia is progressive, but every person's experience is different.

Someone in the early stages may still be fully capable of expressing their wishes, discussing their values, and participating in decisions about their healthcare and future.

As dementia progresses, however, communication and decision-making may become more difficult.

Starting conversations early gives families something incredibly valuable: time.

Time to ask questions.

Time to understand what matters most.

Time to involve healthcare professionals.

And time to make thoughtful decisions without the pressure of an immediate crisis.

Start With Values, Not Medical Procedures

Advance care planning is about much more than deciding whether someone would want CPR or other medical interventions. A better place to begin is with the person's values.

Consider questions such as:

• What makes a good day for you?

• What brings you comfort?

• What are you most afraid of losing?

• Where would you prefer to receive care if your health declined?

• What makes life meaningful to you?

• Are there circumstances in which comfort would become more important than extending life?

• Who do you trust to speak for you if you cannot speak for yourself?

These conversations help families understand the person behind the paperwork.

Later, when difficult healthcare decisions arise, those values can help guide the people making decisions on their behalf.

Choose a Trusted Healthcare Decision-Maker

One important part of advance care planning is identifying someone who can make healthcare decisions if the individual becomes unable to make or communicate those decisions independently.

This person may be called a healthcare agent, healthcare proxy, or medical power of attorney depending on where you live.

Choosing this person deserves careful thought.

The best choice is not necessarily the oldest child or the person who lives closest.

It should be someone who understands the individual's wishes and is willing to honor them—even when making those decisions may be emotionally difficult.

Once someone is chosen, talk openly.

A name on a document is helpful.

A person who truly understands why certain choices matter is even more valuable.

Put Important Wishes in Writing

Conversations are essential, but documentation matters too.

Depending on your circumstances and where you live, advance care planning may include documents such as:

• an advance directive

• a living will

• healthcare power of attorney documentation

• instructions about specific healthcare preferences

Families should also know where these documents are located.

Consider providing copies to the healthcare agent, appropriate family members, and healthcare providers so they can be accessed when needed.

Documents that no one can find during a crisis aren't very helpful.

Planning Should Be an Ongoing Conversation

Advance care planning isn't something you complete once and forget.

That is particularly important with dementia.

Preferences may evolve as health changes and as individuals and families better understand what living with the disease means for them.

Revisit the conversation periodically.

Ask whether anything has changed.

Talk about new concerns.

Include the person living with dementia in conversations and decisions for as long as they are able to participate.

The goal isn't simply to complete paperwork.

The goal is to continue honoring the person's voice throughout their care.

What If Dementia Has Already Progressed?

If your loved one is already experiencing significant cognitive changes and advance care planning was not completed earlier, don't assume you've missed your opportunity to plan.

Start with what you know.

Look for existing healthcare documents.

Talk with their healthcare providers.

Include your loved one in decisions to the extent they are able to participate.

Think about conversations you've had in the past about healthcare, independence, quality of life, spirituality, and what mattered most to them.

Families may also benefit from guidance from healthcare professionals and, when appropriate, legal professionals when questions arise about decision-making capacity or legal authority.

You don't have to figure everything out alone.

Give Families Something Better Than Guesswork

One of the hardest positions a family member can face is being asked:

“What would they want?” ...and realizing they don't know.

Advance care planning cannot remove every difficult decision.

But it can replace some of the uncertainty with direction.

Instead of asking, “What do I think we should do?”

Families can ask a much more meaningful question:

“Based on everything they told us, what would they want us to do?”

That difference matters.

How Guiding Sol Supports Families

Navigating dementia, caregiving, and future healthcare decisions can feel overwhelming—especially when families are unsure what questions they should even be asking.

Guiding Sol Doula Services helps individuals and families begin these conversations before a crisis forces them to.

We can help you explore values and healthcare wishes, organize advance care planning conversations, identify questions to discuss with your healthcare team, and help family members better understand what matters most to the person they love.

Planning doesn't mean predicting every possible situation.

It means creating a foundation families can return to when difficult decisions arise.

Final Thoughts

When dementia enters a family's life, there are many things that cannot be controlled.

But there is something powerful that can be protected:

the person's voice.

Start conversations while there is time to have them slowly.

Ask what matters.

Listen carefully.

Write important wishes down.

Choose trusted people.

And revisit those conversations as circumstances change.

Advance care planning isn't about giving up hope or focusing on death.

It's about helping ensure that, even as dementia changes someone's ability to communicate, the people caring for them still know the values, wishes, and priorities that made them who they are.

If your family is navigating dementia or beginning to think about future healthcare decisions, Guiding Sol Doula Services offers a free 30-minute consultation to help you determine your next steps.